Unmet health care needs and impact on families with children with disabilities in Germany

Abstract

Objectives: We sought to determine the independent effect of unmet health needs on family burden, in addition to the effects of functional impairment and parental care load, in children and adolescents with disabilities.

Methods: We conducted a cross-sectional survey of 273 families with children with disabilities using ambulatory services at an academic children's hospital in Germany. We measured family burden using a translated version of the Impact on Family Scale (FABEL). Independent variables were unmet health needs in 4 areas (medical care, care coordination, health education, and psychosocial services), level of functional disability, and nursing care load at home. Control variables included the child's age and gender, maternal employment status, and parental educational attainment.

Results: Most children had complex health conditions such as brain injury, congenital malformations, metabolic disease, myopathies, and brain tumors. Nearly half of families (44.6%) received home nursing cash benefits, indicating high care load. Parents reported most unmet needs in the areas of psychosocial counseling (17.2%) and care coordination (8.1%). After controlling for sociodemographic factors, unmet health needs predicted family burden independently of type (mental retardation or mobility impairment) and number of disabilities and nursing care load. Although only a few parents reported lack of medical services, this factor also contributed significantly to family burden. Multivariate analysis with these variables explained 45% of the variance in impact on the family.

Conclusions: Addressing unmet health needs may alleviate the impact of caring for a child with a disability. Further studies are needed to show more definitively that families can benefit from integrated services including psychosocial counseling.